"Only when we are brave enough to explore the darkness willwe discover the infinite power of our light." -Brene Brown

When Jeff and I found out that we were expecting we were thrilled. Although, at times, we both felt less than confident that we are really being understood. People are curious by nature and we know that there are likely many things that people want to ask us, but they are not sure if they should, or if it is acceptable to ask. Our journey has revealed sides of me that I didn't know existed. It has changed me in many ways. I have dealt with a lot of heartbreak, a lot of sadness, a lot of doubt and shame, but I have come out a stronger, wiser, more grateful person, ready and wanting to help others. Below is our journey in a nutshell, a few of the questions we have been asked the most and a few things that we recommend. You can also find our story here.

Preparing for Pregnancy

Jeff and I knew that we wanted to have children and were anxious to get started on this exciting journey but, we decided to wait several months before trying. We were newlyweds and wanted to enjoy the first few months of being married. So it wasn’t until about 8 months into our marriage that we started trying.

I decided about 6 months before we got married that I would go off my birth control pills and that we would use alternative methods of contraception until we were ready to get pregnant. I had been on birth control for so long that I thought it would be a good idea to let my body adjust to its natural cycle. I thought this would be helpful in preparing for pregnancy. What I didn’t realize was that my birth control pills were also controlling my tendency towards endometriosis and polyps.

A few months into our marriage I started having very heavy and painful periods and although I contacted my doctor, I wasn’t too concerned. The doctor wasn’t very concerned either and I told her that we were moving forward with starting a family. She said if you aren’t pregnant in 3 months we start fertility treatments. Three months? - This sounded very aggressive to me and it also made me angry that she would even put that doubt into my mind.

A few things that I learned and that I recommend…

Do not go off birth control until you consult with your doctor. Talk to him/her about the benefits of being on and off and what makes the most sense if your next step is to try to get pregnant. I have since heard that you are the most fertile in the first month after you go off birth control and I have also heard that it helps to preserve the life of your eggs! Who knows if there is any real truth to that, but in general birth control can help you maintain a healthy reproductive system.

Visit an OB/GYN that you trust and if you have any concerns or questions, ask them. If you are not satisfied with the answers, speak up and insist.

If this applies to you, have your partner get checked out too. A friend of mine had her husband get a full work-up, including semen analysis before they even started trying. I remember her telling me this and I thought she was nuts! But I totally get it now. It gave her peace of mind because as they embarked on their journey (which included an ectopic pregnancy and a miscarriage), she knew that her husband was in good working order. It was one less thing for her to question.

Trying to Get Pregnant

Within 3 short months of trying to get pregnant and failing I started to get anxiety. That seems hilarious to me now-just three months when the experts say on average it takes 6 months to 1 year. But what if that doctor was right? What if I needed some kind of help to get pregnant? At the time, I thought that would be horrible. I felt ashamed at just the thought of needing help with something that is supposed to happen so naturally. My relationship with my husband and our decision to have children is something that I hold sacred. It is an incredibly intimate and personal decision. So, as time went along and people started asking “so, do you want to have children? What’s going on? Are you guys trying?” I found myself not able to share what was really happening. It wasn’t a lie that we waited but when people started asking if we were trying, I said no that we were waiting. I just wanted to keep this aspect of our lives private. I didn’t want the added stress of family and friends and I also wanted it to be a surprise when we shared the news that we were expecting.

A few things that I learned and that I recommend…

Do not be tempted to go on fertility websites and message boards where women speculate about whether or not they are pregnant during their TWO WEEK WAIT. Of course, not all message boards are the same, and it is so important to be heard. But in my strong opinion, it is absolutely agonizing and can be a waste of your time and mental and emotional energy to peruse message boards looking for answers. The two weeks after you have ovulated are difficult enough as you are paying attention to every twinge and sensation in your body in the hopes that you might be pregnant. Of course community is important and there are some helpful sites out there, but it is easy to get sucked into the woes of someone else's negative experience and that can add to your fear.

Confide in a friend or family member that you trust and with whom you can share your concerns and fears. Keep them up to date on your journey and seek their advice instead of the advice of strangers that you do not know online.

Purchase the book, Taking Charge of Your Fertility. It begins with basic biological information on the male and female reproductive systems and then delves into understanding your menstrual cycle and paying attention to the cues your body gives you so you know when you are ovulating.

Consider purchasing the book Making Babies by Dr. Sami David. I say “consider” because although I enjoyed the book, it did make me a little crazy thinking about all the possible things that could be wrong with me. I love Dr. David’s mostly-natural approach to conception and understanding your body. The book was great for me because my circumstance is quite rare and I felt like I was figuring out what could potentially be going on with my body.

Visit the website Resolve.org. They are an incredible organization and are known for their support programs and services.

Find a therapist that you love! After two pregnancy losses I sought the help of an incredible therapist whom I continue to see. She has helped helped me find clarity throughout the unexpected journey that I have had.

Miscarriages

Almost a year after we started trying to get pregnant, we visited our first fertility clinic. A friend recommended that we see Dr. Nicole Noyes at NYU.

Upon our first meeting with her, and after viewing our charts and medical history, she said “looking at your charts I don’t know why you are here!” And that is exactly how I felt at the time. There was no way to prepare myself for what was to come-back to back pregnancy losses. Being awake for my D&Cs, complications from surgery...it was awful, but I had faith and got through it all. I talk all about it in my story.

A few things that I learned and that I recommend…

Be kind and gentle with yourself when you are suffering through pregnancy loss. Ask your partner, family and friends for their companionship. Don't try to be strong. And don't be ashamed to need help. It's ok to need the support of your loved ones. I couldn't have gotten through my losses without my husband and loved ones.

Most miscarriages take time to resolve. Passing naturally is not always an option or a desire for women. Take some time to understand how you are feeling before deciding how to proceed. I was so overwhelmed with sadness that I wanted to have my D&C the same day I found out that the baby's heart stopped beating. But it didn't give me any time to mourn the 'life that had been' while it was still within my body. The hormonal shift was drastic for me and it was emotionally traumatic. I was pregnant that morning and then that afternoon, I wasn't.

We chose IVF at the advice of our doctor at NYU. After two miscarriages, it was recommended that we do IVF with PGS to prevent me from having another miscarriage due to a chromosomal abnormality with the baby. Up until that point, I had never taken any fertility drugs-not even Clomid. But, I was heartbroken and couldn't bare the thought of another loss. We knew so many people who had successful IVF stories, so we decided to move forward with it.

What we didn't know at the time was that I had an underlying health problem. We don’t think IVF caused my kidney disease, but we do believe that the drugs somehow made it become active. I do not have a history of Kidney Disease and there has never been another case reported like mine where a woman got CKD after being stimulated. There are many theories as to why the disease occurs, but IVF is not one of them. We are incredibly lucky that we did my egg retrieval when we did, because I would not be given medical clearance to do it with my condition.

A few things that I learned and that I recommend…

Listen to your body. If something feels off, it probably is. Don't ignore it.You are your best doctor. So, get a complete medical workup before moving forward with taking any drugs to stimulate your ovaries-especially the long list of drugs involved for an egg retrieval and embryo transfer. All fertility clinics will do this upon becoming a new patient, but they do not typically repeat certain tests, unless you ask. For example, at NYU they test your thyroid once a year. But, I knew something was off with my body and it was only when I insisted that something was wrong did they check it again. My thyroid level, which had previously been normal, was through the roof indicating that something was wrong and my transfer was immediately canceled.

Fertility: IVF

So, we found out that my thyroid hormone (TSH) was abnormal and my IVF cycle was canceled, so now I was in the hands of my primary care physician. But, unfortunately, it took two months to find out what the underlying issue really was. A simple urine test would have cued us into what was going on, but that was yet another thing that I had to ask my (former) PCP to run when I came back complaining that my symptoms weren't going away. I'm not all down on doctors at all-one helped to give me my son, and one is helping to save my kidneys-I just feel very strongly that we know our bodies better then they do and we have to speak up.

A few things that I learned and that I recommend…

Find a doctor that respects you and listens to you!Especially if you are dealing with a chronic medical condition, you and your doctor are a team. I'm sure that Dr. Jai thinks some of my heavy metal detoxes, supplements and specialty diets are a bit over the top, but he has never discounted anything I told him I was working on with my nutritionist, nor has he every made me feel bad for asking him (a million) questions. Rather, Dr. Jai listens in the hopes that something might give him a clue as he continues to research causes of and a cure for Chronic Kidney Diseases.

Medical History

On April 24, 2013, I was diagnosed with a type of Chronic Kidney Disease called Focal Segmental Glomerulosclerosis (FSGS)-Tip Lesion Variant. I have grown and learned so much over the last two years. I still dream of my doctor calling to say “Elizabeth, we have never seen this before…I just can’t explain it…you are completely cured!” But I have also come to know the reality of CKD.

FSGS is a slow, degenerative disease and if I continue to lose large amounts of protein from my urine, I will need dialysis or a kidney transplant in about 8-10 years. It’s a sad reality, and one that often leaves me feeling completely out of control and searching for answers. But instead of sitting and worrying over the next 8 years, I am doing everything I possibly can to not get to that point. I am determined to NEVER see that day come.

UPDATE: As of August 2016, I am officially in Partial Remission! This means that I have less that 1 gram of protein in my urine. People with healthy kidneys do not leak any protein, but when I was first diagnosed, I was leaking 13 grams. So, this is a huge milestone for me and one that I am very proud of! I am clearly in the right hands working with Dr. Jai who has been leading me down this road to recovery.

I am often working on fundraising efforts to support Dr. Jai and his nephrology team at Columbia's New York Presbyterian Hospital. If you would like to make a donation please follow these instructions.

My Kidneys

Although my kidney disease did not cause me to miscarry, being diagnosed with Chronic Kidney Disease means that I am currently under treatment for my condition and the medications that I take are very harmful to an unborn child. My condition can cause me to have large amounts of protein in my urine and low protein levels in my blood. When you have protein in your urine you are at increased risk for high blood pressure, blood clots, heart attack, diabetes and kidney failure. This is why pregnant women have their urine checked often and sometimes submit 24-hour urine samples. It is incredibly dangerous to have protein in your urine, especially while pregnant, as it can lead to all of the complications mentioned above. Pregnancy might cause my disease to worsen.

When I first received my diagnosis in 2013, we were hoping that I would be in full remission by the end of the summer. We were expecting that I would get the medical clearance to get pregnant within a year. Full remission is still yet to come, and I am so grateful to have had the experience of being pregnant through gestational surrogacy. It allowed me to focus on getting healthy for my growing family and myself.

A few things that I learned and that I recommend…

Consider all of your options. Surrogacy is not for the faint of heart.You need to give up control and trust someone (that you may not know at all) completely. To have my best friend carry our son, is a gift that I can never repay. Only now that we are working with a surrogacy agency to get matched for Baby #2, do I fully understand how lucky we were to have Stephanie offer to carry for us.

Prior to signing any contracts with a potential carrier-review any and all opinions, beliefs, desires, about every single aspect of the pregnancy and birth. This can seem incredibly overwhelming, and it is, but it is fundamentally important to know that you ALL (including surrogates partner) agree on ALL terms, before moving forward.

Be sure that your agency (if you are working with one) has dedicated staff to walk both intended parents and surrogates (and partner) through the entire process-from first meeting, to understanding your contract, and throughout the pregnancy if needed or desired. Especially, if you do now have a large support system, it is important to know that the agency you choose has your back.

Be Patient. It is easy to get excited upon reviewing surrogate profiles and intended parent profiles. It's easy to let your emotions take over - especially, if it's been a long and bumpy road to parenthood or if you have been wanting to be a carrier for some time. This is one of the most intimate things you are embarking on and it's possibly going to be with total strangers! It certainly makes for a very interesting relationship and hopefully it will be one that is respectful, understanding and good in nature. But always remember that you are entering into a business agreement with each other. This will help to keep healthy boundaries between all parties involved.

Be prepared for lots of question, skeptics and nay sayers. Although we did get our fair share of critical inquiries and some strange looks when we shared our news, we were very lucky to have an incredible support system in our lives and to receive positive responses from most people. Be selective with whom you share your news with-both as intended parents and as surrogate. Especially if you come from a culture, community or religious background that may not be as supportive of building families in what some consider "non-traditional" ways. When the baby arrives, you can tell them that the stork brought it. :)

Surrogacy

Navigating the legal process with my best friend made things so much easier and now that we are working with an agency and meeting possible candidates I realize just how lucky we were.

There were so many things I did not understand or know about when we started the surrogacy process for example, surrogacy is not legal in every state! In fact, it is illegal in the state of New Yorkwhere we live! Massachusetts, where Stephanie lives and where Garrison was born, is a “surrogacy-friendly” state. That basically means that although there are not any laws specifically surrounding surrogacy, the state is generally supportive of the process-it is legal to be in a contractual relationship and to compensate a carrier. Keep in mind that just because a state allows surrogacy for heterosexual couples doesn’t mean the law is the same for same sex couples.

Below is a state by state list and a map outlining surrogacy laws for both heterosexual and same-sex couples.

A few things that I learned and that I recommend…

Educate yourself. Know the surrogacy laws in each state and how they will affect you. If you are working with an agency, you must work with a carrier that lives a a surrogacy-friendly or legal state. If you are working with a friend, who does not live in a surrogacy friendly or legal state, proceed with caution.

Legalese

Although Jeff and I were excited to create a birth plan, because Stephanie was a pro at being pregnant and a veteran at natural child birth, this was not a priority for her. This was one of the few times during our pregnancy that I felt sad and out of control. Although our entire experience with Stephanie was literally perfect and our birth was peaceful and more beautiful than I ever could have imagined, this just reminded me that I wasn't carrying our child, nor was going to physically birth our child. I talk about this more in our story.

A few things that I learned and that I recommend…

As intended parents, attend child birthing classes! This is something that we did not do, but I wish that I did. Not only is it a great way to learn more about what the birth process is, but it is also a wonderful way to build community and be among like-minded individuals who are attending the same class.

Read the book The Birth Partner. It is the most informative book on childbirth that I know of. Both Jeff and I read it and we learned everything that we needed to know about childbirth.

Visit the hospital, birthing center or place where you intend on giving birth and make sure it feels like the right place for you. This is another thing to make sure to discuss prior to signing contracts. Often times, carriers will understandably want to work with their current midwife or OB. So, plan to speak with them and consider meeting them and visiting the facility where the birth is being planned for, prior to signing contracts. Certainly make sure this happens prior to the birth.

Go on a Babymoon! After all, you are expecting and deserve to be pampered and to enjoy life as it is and before the baby arrives. This doesn't have to be extravagant, but rather simple and just some time dedicated to being with your partner (or spending time alone or with friends if you are a solo intended parent) before your life changes forever!

Preparing for Birth

This was the easy part! With the birth order showing that we were the legal and intended parents, we stayed for 2 nights in the hospital (Stephanie only stayed for 1) before we were discharged. We were able to leave the hospital with our names on the birth certificate and our baby in our arms!